Kathy Sinnott (Ireland)

MEPs speak out on dementia

Kathy Sinnott (Ireland) talks to AE about her priorities for the European elections (May 2009)

In the run up to the elections, Alzheimer Europe asked Members of the European Parliament the following questions:

1. As the mandate of this European Parliament draws to a close, we would be very interested in hearing which you consider to be the key accomplishments of this Parliament which had a direct impact on people with Alzheimer’s disease and their carers?

2. After the European Parliament elections in June, which are the main policy initiatives that will be important for people with dementia and their carers?

3. If you are re-elected, do you have any personal priorities that would be of particular interest to people with dementia and their carers?

Kathy Sinnott: I feel that the key accomplishment of this Parliament was the creation of the Special Interest Group on Carers and Caring. As a full time carer for over three decades, I have experienced first hand the difficulties facing carers and the people they care for. In June 2007, I founded the European Parliament Interest Group on Carers with the aim of ensuring that policy development takes the issues of carers into account and to check policies for their impact on the situation of carers. The Interest Group on Carers vets legislation for the good of carers and aims at making MEPs more aware of their situation. The Carers Interest Group, of which I am organiser and co-chair, cooperates and interacts with Parliamentary Intergroups, such as the Intergroup for Disability, the Intergroup on Ageing and the Intergroup for Family, where the issue of carers is critical.

Two reports that I authored that I felt were relevant to people with dementia and their carers were the Employment and Social Affairs Committee report on the European Mental Health Strategy and the Environment, Public Health and Food Safety Committee report on Prevention of Injury and Promotion of Safety.

Finally, I brought two European Commission projects to Ireland on the Rescue of Person with Disabilities in Emergencies. The first project was general while the second focused on flooding. I am one of the first signatories of the “Verona Charter” which came out of these projects and emphasises the right of people with disabilities to be treated equally in access to rescue services. I am currently a co-author of a Written Declaration in the Parliament which urges the Commission and Member States to endorse the principles of the Verona Charter.

Carers are often under-valued and neglected in most European laws and policies. Carers are invisible in employment legislation, despite the EU's competence in this area. We need to bring carers and their concerns into focus and support them. Carers are important in how we deal with an ageing Europe in terms of meeting the needs of our older citizens and stabilising our plunging birth rates.

One of the main pieces of legislation which I think will have a detrimental effect on people with dementia and their carers is the "on-call" provision in the Time at Work Directive. This Directive poses a serious threat to respite services for home carers. As the Directive is presently written, all hours for which a worker is at their place of employment, must be counted as time at work. Take the example of a family carer who cares for a person with dementia in their own home and is given weekend respite. Typically a family carer provides care 24/7 for that person within their own home. In order to have a weekend off, it is necessary for a care worker to come into the home and stay over, even though during the night hours they sleep. The person being cared for may not require intervention at night but under the present formation of the Working Time Directive, the time spent sleeping is considered as time spent working which means that a second care worker will be required to work the next morning.

The Time at Work Directive is a prime example of legislation which ignores the contribution of carers and fails to take them into account. The provision in this Directive for "on-call" working time will make providing respite to carers far more expensive and in many cases impossible. The fact that the needs of family carers were not included in this Directive once again highlights that informal care is not valued to the same extent as formal care.

A number of existing and current policy issues are relevant to the issue of carers and should be focused on in the next term. These include the Lisbon Agenda with its emphasise on favourable working conditions, the Mental Health Strategy, PROGRESS, the Public Health Programme, the Green and White Papers on Demography, the Green Paper on Modernising Labour Law and the Green Paper on the Workforce for Health.

If re-elected, one of my priorities would be to promote research into dementia and promote an appreciation of the value of every human person regardless of age or condition.

It is because of human dignity that, for me, caring is about a relationship, a very special type of intense relationship and this would only be improved if we can lift some of the worry from the shoulders of carers. However, one of the biggest challenges facing carers is the lack of appreciation of caring.

When I brought up the issue of carers during a Committee meeting in the European Parliament last year, I was told that carers, people caring for the elderly, people with dementia, people with disabilities and children, are people on career breaks. To call caring a career break is to show ignorance of what carers do and of the value of what they do. Governments and Europe need to take carers seriously in the future.

If I am re-elected, a particular goal of mine is to continue the work of the Interest Group on Carers and to get recognition for carers and for the essential service they perform.